Asian MS Newsletter Autumn/Winter Issue, 2012
Asian MS Newsletter Autumn/Winter Issue, 2012CONTENTS-Impossible Is Nothing: A Personal Story….p.1-2-A message from the Editor….p.3-General News….p.4-5-First Serve!: Tennis Tournament Fundraiser…..p.6-A Chance To Get Involved….p.7-9-Relapse Support Scheme….p.10-Care & Support Update….p.11-MS Society Awards….p.12-Dates For Your Diary….p.13 -Paralympics Opening Ceremony; Launch of WAMS….p.14-Funding Support Opportunity; Getting Your Flu Jab….p.15-Recipe From Lubna; MS In The Media….p.16-General Information….p.17-Latest Research & MS In The News….p.18-Fundraising For Asian MS….p.19-Useful Information….p.20
Content
Autumn/Winter Issue 2012
Asian MS – Newsletter IMPOSSIBLE IS NOTHING!
The legal world always seemed so glamorous to me. Every week I’d sit and watch Ally McBeal and think “that could be me.” I even went to the business card machine in the local supermarket and had my own cards printed up at the age of 15. So when I left school, it was clear to me what I wanted to do. After finishing my A’ Levels, I went to study Law at university. And three years later I graduated, ready to take on the legal world! In my early 20’s, I was diagnosed with MS. I was devastated and dreaded the worst. The illness was new to my environment. I did not know anyone who had MS and there was a general lack of understanding as to what MS was. Due to my diagnosis, I could not go on to do my Post Graduate which was mandatory for me to become a solicitor. As I was initially very weak, I could not over exert myself and found comfort in keeping my mind occupied. In a way, I started feeling sorry for myself. I was fortunate to have exceptional support from my family and friends. In order to keep busy and divert my mind elsewhere, I began to take up various courses including complementary therapies. This was in the hope that I would be able to understand myself, my mind and my body; to try and understand why this was happening to me. The courses did not give me the answers to my questions but they did teach me many things, including having a positive mind and an ambitious outlook. I was moving on and getting on with my life. My legal dreams behind….. Is this what I wanted? A few years later, a conversation with my father changed everything. He reminded me how much I wanted to study law and how hard I’d worked during my degree. He was right – but I was only one third of the way to becoming a solicitor. I had a lot of catching up to do and over the years doubts had built up in my mind as to whether I could still do it. There was only one way to find out. I applied for the post graduate course and to my surprise, I was accepted. A few weeks later, I was back at university, studying the subject I loved. Going back to studying was difficult – not just adjusting back to lectures, coursework and exams, but also having the loss of income, social life and, most, importantly coping with the MS.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Looking back, it was not as hard as I thought. I had support from organisations that I did not even know offered help. This gave me even more encouragement. Throughout this time, all I could think was that I had to do this, not only for me but for my family. Today, I’m working as a solicitor in a busy law firm. I draft legal documents, negotiate deals and represent clients in court – just like the lawyers in If you would like others Ally McBeal! to hear about your My message is simple, “if you put your mind to it, nothing is impossible.” Having MS, or in fact, any other illness does not mean that your life has to stop. There may be obstacles and restrictions on your journey but the key is to stay positive. Ms Dee Popat - LLB (Hons)
Do YOU have a personal story to tell?
personal journey with MS then please do get in touch with us here at Asian MS. Email [email protected]
Dee has been a member of Asian MS for around two years. She has also been involved in other MS charity work and organised the “L-Factor” talent show which raised £5,000. She’s always looking to do more MS-related work when the opportunity arises. She is also involved in other voluntary work – she is/has been the Secretary of the Young Lohana Association of North London, Cultural Secretary for the Hindu Council in Brent, Chair of the Independent Custody Visiting Panel (Harrow), a volunteer with Ashiana (which helps children with learning difficulties), and a member of the Independent Advisory Group for Harrow Police. She also enjoys socialising, eating out and watching movies.
FUNDRAISING FOR ASIAN MS If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on [email protected] We rely on donations to keep going so if you know of someone wanting to raise money for charity, why not suggest that they fundraise for Asian MS? There are further details in this newsletter about how to make a donation and what the money is needed for.
Deadline for the next edition of the newsletter is 28th February 2013. Please send your stories, links, photos and news to [email protected]
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A message from the Editor……
Summer has come and gone very quickly and what a summer it was. The Olympic and Paralympic Games brought the nation together and put the spotlight on the amazing achievements of athletes from across the globe. I was lucky enough to see live action from both events but I was particularly amazed at the athletic ability of the wheelchair rugby players. What a completely crazy and brutal sport! What many Paralympic first-timers seemed to come away with was a sense of anything is possible and achievable if you put your mind to it. This is what we try to encourage here at Asian MS, and we would love to hear about your personal stories about how you have coped with your MS diagnosis. This is why the front page for this edition has been given to one of our members, Dee Popat, who continued to pursue her dreams of going into the legal field post-diagnosis. We are hoping to run a few fundraising events soon, so please do keep us informed of any ideas. With Eid, Navratri and Diwali having come and gone, and Christmas fast approaching, please do remember Asian MS when you’re thinking about making charitable donations during these celebratory events. Lastly, we rely on volunteers and there is always more work than there are hands to get it done! If you’d like to get involved please let us know. Specifically, we’re currently looking for a Membership Secretary and a Website Editor. Enjoy this edition and please pass it on to anyone who you think may be interested in our work. -Trishna x PS. Please don’t forget to book your flu jab, if you have MS! More details on p.13.
CONTENTS
-Impossible Is Nothing: A Personal Story….p.1-2 -A message from the Editor….p.3 -General News….p.4-5 -First Serve!: Tennis Tournament Fundraiser…..p.6 -A Chance To Get Involved….p.7-9 -Relapse Support Scheme….p.10 -Care & Support Update….p.11 -MS Society Awards….p.12 -Dates For Your Diary….p.13
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
-Paralympics Opening Ceremony; Launch of WAMS….p.14 -Funding Support Opportunity; Getting Your Flu Jab….p.15 -Recipe From Lubna; MS In The Media….p.16 -General Information….p.17 -Latest Research & MS In The News….p.18 -Fundraising For Asian MS….p.19 -Useful Information….p.20
GENERAL NEWS
International collaboration to speed up research into progressive MS
The MS Society has joined an international collaborative effort to speed up the development of treatments for people with progressive forms of MS.
Amy Winehouse Foundation funds short breaks for young people with MS
The Amy Winehouse Foundation has recently given
The International Progressive MS Collaborative was launched on World MS Day in May by charities from the UK, USA, Canada, Italy and the Netherlands, along with the MS International Federation.
the MS Society a £10,000 donation, of which £5,000 is to be spent on grants for short breaks, respite care and holidays for people with MS aged 25 and under. If you know anyone who may benefit from this opportunity please ask them to contact the Grants
Researchers and medical experts from across the globe will come together later this year to discuss priorities and identify the research that is needed to get us closer to finding treatments specifically for progressive MS. Dr Doug Brown, the MS Society’s Head of Biomedical Research and a member of the Collaborative said: “There are currently no treatments for people with progressive MS to slow the worsening of disability, and trials and studies to identify potential treatments have so far been disappointing. That’s why we’re delighted to be part of the International Progressive MS Collaborative – a proactive attempt by MS charities around the world to find an urgent answer to this problem.”
Team on 020 8348 0700 or [email protected]
For those with MS over 25, grants for short breaks, respite care and holidays are available through the MS Society’s Short Breaks and Activities Fund. More information about the fund
It is hoped that by working together, MS charities can identify research opportunities more quickly and effectively.
can be obtained from the contact details above or by phoning 0131 335 4050.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
GENERAL NEWS
MS Society Professional Study Grant Programme
The study grant programme is available to all health and social care staff who work with people affected by MS. The aim of the programme is to enable health and social care staff to attend courses or training events that will help them provide people affected by MS with the highest possible standard of care and support. The Society can award up to £1,000 per application and will usually contribute 50% of the total course fees; however this can be exceeded in exceptional circumstances.
Browse and shop online - visit
CHRISTMAS IS COMING…
This year’s MS Society Christmas catalogue is now available with a fantastic selection of cards, gifts and stocking fillers. All proceeds go towards beating MS.
Catalogue order line - call 0844 314 4384 Catalogue customer services - call 0844 314 4385
To apply for a grant, applicants must be members of the MS Society’s professional network, which they can join free on the website at: http://www.mssociety.org.uk/ms-support/forprofessionals/join-the-professional-network The grant application form can be found on the MS Society’s website at http://www.mssociety.org.uk/msresources/professional-grant-application-form For more information about the Study Grant Programme and other professional development opportunities please contact the education department on 020 8438 0888 or email [email protected]
www.mssocietyshop.co.uk
ONLINE CHATTER
Currently being discussed on the Asians MS Facebook group: -Getting your own MRI scan -Vitamin D -The Paralympic Games -Asian attitudes towards disability -Disease Modifying Drugs and other medication -Do you prefer cooler weather? https://www.facebook.com/group s/2416402103/?ref=ts
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
FIRST SERVE!
In keeping with the MS Society’s theme of “Keeping Active”, Asian MS Committee members Vicky Rose and Vinnie Kochhar, decided to raise money for the MS Society and Asian MS by holding a Tennis Tournament and Lunch at the Chandos Lawn Tennis Club, their local tennis club in Hampstead. Having enlisted the professional help of another club member, Pam Henry, a Tennis Doubles Day was organised for a fine, crisp September morning. Around 30 members and non-members gathered at the Club House, bright and early. Most contenders donned the bright orange t-shirts of the MS Society and warmed up with a little pink bubbly; the competitors took to the courts with great enthusiasm. The matches were hotly contested; the pride of Chandos Tennis Club was at stake and there was the promise of extravagant prizes….. Two hours later, two winners emerged, our own Greg Rack and a guest from Regents Park Tennis Club, Nancy. Food also featured high on the agenda, in the morning guests were offered mini Danish pastries, home-made almond shortbread and exotic fruit platters. Twenty other supporters and friends joined in for lunch, which was a lavish affair and included fatoush salad, avocado with wasabi mayo and aloo chaat as starters; teriyaki salmon, Maharashtran chicken and aubergine miso to follow; and finally, New York cheesecake, chocolate tart and mango fool. Game, set and match to our Head Chef Madhvi Chanrai who generously donated her time and energy! It was all washed down with fine wine from an anonymous donor!! Then it was time to get down to the serious business of raising more funds via the silent auction and the raffle. Many local businesses had donated prizes. The Muscles from the Chandos coaching team, had each donated a tennis lesson; these prizes proved to be very popular and helped us to raise £400 from the raffle alone. A special thanks to all the donors of the silent auction prizes, Gerry Defries, local artist for his painting; “Racing in Barbados”; Mona Chander for the Jimmy Choo Clutch; Kara Dressel for Pilates Classes; and our own Rajiv Taneja for tickets to a Man Utd match at Old Trafford. These donations raised over £1000. Thames Valley Sports deserve a special mention for their support and generosity in providing the tennis balls for the tournament and having a stall at the event, which was manned by Asian MS member and Thames Valley Sports owner, Ramesh Gangotra. The MS Society staff, Lee Dainty and Saher Usmani were a great reminder of why we were there - to get loud about MS. Behind the scenes Laurence Tickell helped to make the whole event colour coordinated and MS themed. Chandos Lawn Tennis Club provided their lovely facilities to enable us to raise over £3000 all because of the big heartedness of the members and guests. Team Chandos were truly amazing, they know who they are. A brief appearance by club Chairman, David Bernstein, also Chairman of the FA ensured that the football fans at the club were also kept happy; a great way to kick off the autumn and end the Summer of Sport.
~Vinnie Kochhar, Asian MS Chair
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
Experiences and perceptions of healthcare services from people with MS and their clinicians This study aims to gather the experiences of people with MS of health care services and investigate what they feel has been helpful or could be improved What will participants be asked to do? In this study you will be asked to talk to a researcher about your experiences of health care services for MS and your health care needs (for both physical and psychological/emotional symptoms). This will last up to an hour. This can take place in your home or work, or at a University of Manchester building. We would like to make taking part as convenient as possible for you, however, please know that we cannot reimburse your travel expenses. A small group of people will be invited to take part in a follow-up interview six months and twelve months after the original interview. You can take part in the original interview without taking part in the additional interviews. If you are over 18 years old with a diagnosis of MS and are living in the Greater Manchester region, the study would be interested in hearing from you. It runs from September 2012 to September 2013. If you would like to find out more about this study and would like to receive a participation information sheet, please contact Abigail Methley at [email protected] or on 07950-619368
THE MS REGISTER – Have you signed up yet?
The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. You can take part by completing a series of simple online questionnaires. If you are over the age of 18 and living in the UK, with a confirmed diagnosis of MS made by a consultant neurologist, you are eligible to take part in this study. There are also a small number of pilot sites that are collecting clinical information: Royal Victoria Hospital, Belfast; Western General Hospital, Edinburgh; St. Mary’s Hospital, London; Queen’s Medical Centre, Nottingham; and Morriston Hospital, Swansea. http://www.ukmsregister.org
KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: http://www.mssociety.or g.uk/ms-research/getinvolved-in-research
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
‘My MS, My Needs’: Understanding the needs of people with MS in the UK In early-November, the MS Society will launch one of its largest ever surveys, to help it to understand how well the UK is meeting the health and social care needs of people with MS. A short questionnaire will be posted to all the Society’s members who are over 18 and have MS, to ask if they are able to access the care and support they need. The results will allow the Society to campaign for the needs of people with MS.
Help the MS Society set future MS research priorities The MS Society is leading a new project to put people affected by MS at the centre of setting research priorities. Through this project the Society hopes to find the top 10 unanswered questions in MS research.
People affected by MS, MS professionals and neurologists will identify the questions and set the research priorities. This could include any area of MS, from treatments for a particular
change and work to develop services that better meet symptom to support for day-to-day life with MS.
The results will be announced during MS Week 2013, This new priority setting partnership is supported by the James Lind Alliance, an and, as well as a national picture, we will analyse results locally to understand the ‘postcode lottery’ in services for people with MS. To analyse results locally, a large response is essential. Everyone’s response matters and will be independent, non-profit organisation. They specialise in bringing patients, carers and health care professionals together to identify and prioritise unanswered questions. They will guide this work to ensure an unbiased result.
used to support the Society’s work for years to come. The survey, which takes 10 -15 minutes to Participating is easy - the questionnaire takes 15-20 complete, is an opportunity to ask questions minutes to complete. For more information contact the research team at [email protected] or on 020 8438 0822. important to you which could help steer future MS research. Take part in the survey at www.mssociety.org.uk/JLA
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
Living with unpredictability in MS This study aims to explore the question ‘what is it like to live with an unpredictable illness?’ What will participants be asked to do? Participants who live in the Hull, Lincoln and Nottingham area will be offered the choice between having a face-to-face interview, a telephone interview or attending a focus group. Participants who live outside of these areas will be asked to take part in a telephone interview. The interviews/groups will be conducted using a semi-structured format and will be recorded for later analysis. Interviews will last about one hour; focus groups will be held at a local venue and will last about one and a half hours. Please note that it may not always be possible to run local focus groups due to numbers. Each person will receive an introductory phone call to explain the study and answer any queries or questions. Participants will then choose their preferred way of taking part (if possible); once consent has been given the participant can take part in one interview/group. If you have a diagnosis of MS and can speak English, you will be eligible to participate. The study runs from October 2012 to February 2013. If you would like to find out more about this study and would like to receive a participation information sheet, please contact Hannah Wilkinson at [email protected]
MS Activity Weekend
Friday 24th - Monday 27th May 2013 For people with MS, their families and friends Choose from a variety of activities or relax in the tranquil setting of the beautiful Kielder Water & Forest Park. 3 Nights £317 Includes accommodation, activities and all meals Or book the Respite Care Package (over 18) 3 Nights £488 Includes care, accommodation, activities and all meals
To book call 01434 250232 or email [email protected]
www.calvert-trust.org.uk
Tips For Staying Healthy Over Winter ~Keep your Vitamin D levels topped up with supplements ~Make sure your heating is working ~Eat lots of fruit and vegetables ~Keep up with your exercise routine ~Wash your hands to keep those bugs away ~Ensure you have sufficient medication at home
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Mentioned in the last newsletter, the MS Society is running a scheme which Asian MS is supporting. This is a great opportunity for our members to become involved in this innovative pilot scheme.
RELAPSE SUPPORT SCHEME
A trained volunteer from Asian MS will help individuals to decide how best to meet their nonmedical needs during a relapse, the plan will then be written up and the volunteer will be the participant’s point of contact for help. A small grant of £100 will be made available for the person with MS to spend on providing support during a relapse. They can use the money for almost anything they need, for example, contributing towards the cost of petrol if a colleague gives them a lift to work. If you are interested or know anyone who has MS (this is open to all types of MS) and would like to get involved, please do email Saher at the MS Society at [email protected] or call her on 020 8438 0856.
The Relapse Support Scheme was piloted in 2010 in East Sussex and the participants all agreed that this planning process was “worthwhile and made them feel more in control of their lives and the situation”. The scheme is now being piloted with Asian MS to see whether it will be successful with a wider group of people. It is a scheme that assists individuals to plan ahead and avoid disruption to their day-to-day activities when they have a relapse. Symptoms when having a relapse can’t be predicted. However, individuals can plan what support they may need should they have a relapse. The scheme will show individuals how to plan and where support is available.
Example of a Relapse Support Plan . Name: Felicity Farmer (This is a lady that has small children, and works part-time. She has friends and family close by to support her) What help do you think you will need? How often do you think you’ll need this support per day / week? Twice a day Who is your 1 choice who can provide this support for you?
st
Who is the alternative person who can provide this support if your st 1 choice isn’t available?
How much money to say ‘thank you’ / pay for support?
Someone to drive the children to school and home again
My friend My friend Tracey £10 towards petrol Donna, as her children go to the same school Shopping for food Twice a week My friend Pam My friend Tracey £5 bunch of flowers to say thank as she can do you my shopping at the same time as hers Travelling to and from work if Twice per My colleague My dad £10 towards petrol I cannot drive day Philip lives near by and I can share a lift with him To save you looking for contact numbers when you need them, why not list them here so they can all be easily found. Mum & Dad: 01273 555555 Donna: 01273 666666 Tracey: 01273 777777 Pam: 01273 888888 Peter: 01273 333333 Philip: 01273 444444 Jo: 01273 222222 Page 10
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
CARE AND SUPPORT UPDATE
Supported short breaks – A new partnership with Carers Trust and local Crossroads Care schemes hotels in Blackpool or Lytham St Annes over any weekend in December.
People affected by MS who live in England and Wales Weekend stays are 3 nights from Friday night to can now access care and support during their short Monday morning. The price for two people is £179 breaks and holidays, thanks to a new partnership for dinner, bed and breakfast. between the MS Society and Carers Trust. Both hotels are accessible with ensuite wet floor Care will be provided by trained care support workers shower rooms, hoists and other specialist from local Crossroads Care schemes, which are equipment. Bond have a CQC-registered care network members of Carers Trust. They will come to agency which can be booked for the stay if wherever you are staying, to provide that support for personal care and support is needed during the you. Having someone else take over the caring break. responsibilities for a while means that families can go Contact Bond Holidays to discuss a booking on away together – or people with MS can travel 01253 341218 or email [email protected] independently – safe in the knowledge that the main Make sure you mention this offer when booking. family carer will get a chance to rest and recharge their batteries. If you have any comments about Bond Holidays or their accessible hotels, please call 020 8438 This is a pilot project, so at the moment supported 0805 or email [email protected] short breaks can be taken at destinations in most of Wales, on the south coast of England and in East Find Me Good Care – a new website helping Anglia. people make better choices about care and To find out more about the service and how it works, support or to order an information leaflet, call 020 8438 0805 Find Me Good Care, has been developed by the or email [email protected]. Social Care Institute of Excellence to help people take their first steps in seeking the right care. It includes information and guidance on how to Bond Holidays – 2 for 1 MS taster weekends in choose and pay for care, together with a directory December of providers and the opportunity to provide feedback. As a first step in a new partnership with Bond Holidays, we are pleased to announce that people The MS Society is a partner of Find Me Good with MS, their families and carers will be able to take Care, and will hopefully make it easier for people affected by MS to make the choices that are right advantage of a 2 for 1 offer at their accessible for them. More information: www.findmegoodcare.co.uk.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
The Closest I Shall Ever Get To A Paralympic Medal
-THE MS SOCIETY AWARDS, A Personal View by Vinnie
My big chance to mingle with the stars came at the MS Society’s Annual Awards Ceremony, held at the prestigious Royal Garden Hotel, Kensington on 25th September. I was not sure how all the excitement of last year could be beaten, Amrit Gajjar won the award for Carer of the Year (having been nominated by Asian MS.) Another nominee was Richard Gau, in his 80s and sole carer for his wife who is severely disabled by MS and is also diabetic. It was a privilege to sit beside such smiling selfless people. So, when Kate Silverton announced this category I thought how could you possibly choose between any of these heroes (not to mention the third finalist Jan McDonald who was not on our table!)? An impossible task, but in the end the winner was Rory. I remain touched by their stories and struck by their good cheer and humility.
I thought the 2012 event would be a quieter affair and would be a chance to observe and network for Asian MS, as the spotlight would be elsewhere…… This time, I was invited as I had been a Judge for the MS Employer of the Year category. I had thoroughly It was an inspiring afternoon and the icing on the enjoyed the judging process, as it had been a cake was my photo with a silver Paralympic chance to learn about some of the gold star medal and its true owner (!) Stephanie Millward. organisations that create an excellent working She was the environment for staff and awareness of the winner of the MS fluctuating condition of MS. Our shortlist included Inspiration of the AXA Insurance, East Durham Homes and Lloyds Year 2012. Being Banking Group but there were many other organisations who were also worthy of being diagnosed with nominated. MS at the age of The welcome drinks reception was the ideal time to raise the profile of Asian MS with new faces. So I found myself standing next to Janice Winehouse (mother of the legendary Amy) and rubbing shoulders with Oritse Williams of JLS pop group fame. Top MS researchers present included Prof. Alastair Compston and Prof. Robin Franklin. Volunteers were also honoured for fundraising or raising awareness and they enjoyed an afternoon they would never forget. I felt extremely blessed to be seated next to one of the youngest nominees, Rory Bailey. His mum had put him forward for the Carer of the Year Award. He has cared for his mum from the age of 14yrs but has also managed to pass GCSEs and gain a place on a bricklaying course. How could he possibly do it all?
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17 was no bar to her winning 5 medals at the Paralympics in swimming! I needed to get my hands on that piece of silver and here is the proof. I felt honoured to be with all these amazing individuals and left the event on a high. I ran to the cloakroom for my coat only to be stood behind Prof. Giovannoni of Team G fame. I saw his name tag and said “I know you! You’re Trishna’s hero Gavin!!” He laughed; yes he knew Trishna well (our Newsletter Editor no less) and praised her for all her hard work. At least I did not have to explain about Asian MS to him….!
~Vinnie Kochhar (Asian MS Chair)
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
DATES FOR YOUR DIARY
MS Research Day The 4th MS Research Day by Professor ********************************** Gavin Giovannoni and the Neuroimmunology Group at The Royal London Hospital will …..NEWS FLASH….. nd take place on Saturday 2 February from 10am to 3pm. MS Society Chief Executive Simon Gillespie is This year, the talks will cover topics ranging leaving the MS Society to become Chief Executive of from symptom management and lumbar the British Heart Foundation (BHF). Asian MS would punctures to updating you on the group’s like to wish him well in his new role. siblings study. There will also be speakers from Queens Square as the group joins ********************************** UCLPartners. If you want to talk directly to a researcher, or you just need a break and refreshments, ASIAN MS NEEDS there’s a room for you to relax, have a hot drink and talk to the team informally. YOUR HELP! You can stay in one place and hear everything, or you can move between rooms As we expand, Asian MS is in desperate if you wish. It will take place at Church need of more volunteers to help us to House Conference Centre, Dean’s Yard , continue offering our support and services. Westminster, SW1P 3NZ. To book your Communication with our membership is of ticket please go to: utmost importance to us and we are http://msday.eventbrite.co.uk/ currently looking to appoint a Membership Secretary and a Website Editor. The Membership Secretary would be mainly MS Society’s 60th Anniversary! responsible for dealing with correspondence and membership issues (such as maintaining the membership In 2013, the MS Society turns 60 database). The Website Editor would be in years old. It was founded by Mary charge of updating the Asian MS website, and Richard Cave to support and particularly uploading e-editions of the empower people affected by MS. Newsletter and Asian MS news. Please contact [email protected] if The MS Society will be celebrating the you are interested in either post and would achievements of everyone involved in the like further information. Emails should be organisation and looking forward to an addressed to Vinnie Kochhar. exciting future.
Rather than take resources from vital research and support, celebrations will be integrated into existing events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra “60th sparkle”. If you have any ideas about how to make fundraising events that extra bit special then please email them to: [email protected]
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
SANJAY AND VINNIE AT THE PARALYMPIC OPENING CEREMONY
Firstly, it was an absolute privilege to have received tickets via the first ballot. Following the wonderful Olympic games, I was eagerly anticipating the opening ceremony of the Paralympics following the warm up.
Launch of WAMS
“Women Against MS,” or WAMS, is a group of MS Society volunteers who believe that WAMS will become a tailored support group that fits the needs of all women affected I went with Vinnie - well she doesn’t get out by much. It started with an unconventional trip to Multiple Westfield to buy (for guess who) some overpriced Sclerosis shoes. I suppose that was my good deed for the in the day; I never realised I had such serenity! numerous guises that women are expected to be We moved on to the fabulous stadium to absorb the atmosphere. It mother, wife, lover ... an endless list. was kind of surreal The group is having its launch on 26th being there and we January 2013 at the Charles Clore Centre had to keep at Hampton Court Palace, East Molesey, pinching ourselves Surrey, KT8 9AU. It will run from that we were. Even 12.30pm-3.30pm and the programme will before the include: ceremony started, Welcome: Hilary Sears – Chairman the music was great and as Police fans, it was of the MS Society delightful to hear ‘’So Lonely’’ played in such a Jo Johnson: Author of “Shrinking wonderful arena, however, Vinnie thought it was The Monster” hilarious to sing the words “Sue Lawley.’’ A glass of sparkling wine and Different folks different strokes! afternoon tea Once the ceremony began, it was awe inspiring. Booking is currently closed due to It was full of colour, fun and intelligence. It is very the event’s popularity. However, if difficult to capture in words, it was truly you would like to be added to the magnificent. The Queen and the National Anthem waiting list, then please go to: were very uplifting and yes Vinnie did stand http://wamslaunch.eventbrite.co.uk/ leaning on my chair!! It was certainly an ?access=WAMS-VIP experience and magical moment that neither of or contact WAMS London us will ever forget.
~Sanjay Chadha (Asian MS Co-Founder & Committee Member)
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[email protected] Tel: 07848 105191
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Funding opportunity for people with MS
National charity the MS Research and Relief Fund offers grant funding for items including equipment, aids, adaptations, holidays and respite care. The fund can be used either to complement grants awarded by the MS Society where a shortfall in funding exists, or as a single funding opportunity. The registered charity will consider applications for grants for individuals and for groups. For more information contact the charity’s Grants Manager, Dave Farham on 01670 505829 or [email protected] or visit www.msresearchandrelief.org; or contact Julie Gilson, MS Society Grants Manager at 020 8438 0950 or [email protected]
Protecting yourself against the flu
It’s that time of year again when everyone seems to be coughing and sneezing. The flu season is upon us and it is important for MS’ers to know whether or not they should be getting their jab. The current general advice is that people with MS are eligible for a free flu jab on the NHS. These are usually administered in your GP’s surgery. You should be able to speak to your MS Nurse, Neurologist and/or GP about this. The flu jab is an inactive vaccine so is generally safe for MS’ers, however, if you are on any kind of disease modifying drug or symptomatic relief drug then you need to speak to a medical professional first, to ensure that there will be no interactions. Please go to the following links for more information:
FEEDBACK NEEDED!
Asian MS would like to receive your feedback about our newsletter. Please go to the following link to complete the survey: http://www.surveymonkey.com/s/88H DQL6
https://www.wp.dh.gov.uk/immunisation/files/2 012/08/2900359-Seasonal-Flu-A5_v1_0A.pdf and http://ms.about.com/od/treatments/a/flu_shot.h tm
Don’t wait for a flu outbreak to get your shot!
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Recipe from Lubna
Chicken Curry Ingredients: 2lb/900g Chicken (on and off the bone) 2 large onions chopped 1 tsp fresh ginger paste 1 tsp fresh garlic paste 1 tsp cumin (jeera) powder 1 tsp coriander (dhaniya) powder 1 tsp red chilli powder or to taste Salt to taste 1 tsp garam masala 2 chopped tomatoes 2 tblsp vegetable ghee or oil Fresh coriander to taste Method: -Cut the chicken into medium sized pieces. Heat the ghee or oil in a large saucepan. Add the onion and fry until golden. -Add the garlic and ginger paste and fry for a few moments. Add all the ground spices and fry for a minute, making sure the mixture does not stick to the bottom of the pan; add a splash of water if required. Then add the chicken, mixing it well with the spices. -When the chicken has browned, add a cup of water and salt to taste. Cover pan with lid and simmer over a low heat for 15 minutes. -After 15 minutes, add the chopped tomatoes and continue to cook until the chicken is tender. -When the chicken is cooked add chopped fresh coriander. Serve with either rice, chappatis or naan bread.
Lubna, an Asian MS member since 2005, has been kindly sharing her delicious recipes with Asian MS. She was diagnosed with MS following an MRI scan in 1991, with symptoms having included optic neuritis and fatigue. While she feels that she’s slowed down a great deal as she’s grown older, she is still ablebodied and considers herself to be very lucky. She joined Asian MS after she met Shiv (Asian MS Treasurer) at MS National Centre. He was the first Asian person that she’d met who also had MS. She has previously served on the Asian MS committee.
MS In the Media
Shift.ms has been involved in the making of some ground-breaking short films about MS. They are available to view on the Shift.ms site and on the Shift.ms channel on You Tube. “GALLOP”: http://shift.ms/gallop/ “BELONG”: http://shift.ms/belong/
BLOGGING Rani, the Asian MS Publicity & Support Officer has her very own blog. Check her out at: http://missranikaur.wordpress.com/
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
General Information
Information The MS Society has a range of publications containing information and advice for carers and families: • Caring for someone with MS: a handbook for family and friends • MS in your life – a guide for young carers • MS Carers: The man’s guide to caring for someone with Multiple Sclerosis
New editions/modifications for MS Society publications Diet and Nutrition (MS Essentials 11, Fourth Edition August 2012) Oral Health factsheet (September 2012, download only)
For a list of all the MS Society’s key You can order these from the Information team publications showing the latest editions by calling 020 8438 0799 or from the online shop and revisions visit the website: www.mssociety.org.uk/mson the MS Society website. resources/key-publications or call 0300 1000 801. Financial assistance There are two grant funds specifically for carers To contact the MS Society Information • Young Carers Fund Team: Email [email protected] • Carers Opportunities Fund. or call 020 8438 0799 (weekdays 9amThere is also support for carers through the 4pm) Short Breaks and Activities Fund. Carers can apply to this for funding towards short breaks *********************************** and holidays. Find out more from the Grants Team on 020 If you would like a copy of the MS 8438 0700 or [email protected] or visit Society’s latest MS booklet, which has the grants pages on the website. been translated into 12 languages If you live in Scotland, please call 0131 335 4050 including Bengali, Farsi, Gujarati, or email [email protected] Hindi, Punjabi & Urdu, please contact Saher Usmani on 0208 438 0856 or Emotional support [email protected] The MS Helpline is available to give free and They are also available on USB stick for a small fee. confidential advice and support to anyone affected by MS from 9am-9pm, Monday- Friday. *********************************** The helpline number is freephone 0808 800 Please let Asian MS know if you 8000. Please specify if you would like to speak would like to submit a nomination with someone from Asian MS and you will be for the MS Society Awards 2013, as directed to one of our support officers. we will be able to offer help and
support when filling out the nomination forms!
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
LATEST RESEARCH & MS IN THE NEWS
Exclusive: MS drug 'rebranded' – at up to 20 times the price http://www.independent.co.uk/life-style/health-andfamilies/health-news/exclusive-ms-drug-rebranded--at-upto-20-times-the-price-8209885.html Scots scientist in MS breakthrough http://www.heraldscotland.com/news/home-news/scotsscientist-in-ms-breakthrough.19103935 Irish drug maker Elan spins off research arm Brain Research Could be ‘LifeChanger’ for Multiple Sclerosis Patients http://americannewsreport.com/brai n-research-could-be-life-changerfor-multiple-sclerosis-patients8816585 Scientists develop nanoparticle method to help tackle major diseases
www.telegraph.co.uk/finance/newsbysector/pharmaceutica http://www.independent.co.uk/news/ science/scientists-developlsandchemicals/9472275/Irish-drug-maker-Elan-spins-offnanoparticle-method-to-help-tackleresearch-arm.html major-diseases-8327197.html NHS is failing patients with neurological conditions, claims Genzyme touts positive results for report MS drug Lemtrada http://www.guardian.co.uk/society/2012/aug/01/nhshttp://www.bostonherald.com/busine neglect-neurological?INTCMP=SRCH ss/technology/general/view/2022110 A single pill could treat Alzheimer's, Parkinson's AND 1genzyme_touts_positive_results_fo Multiple Sclerosis r_ms_drug_lemtrada/ http://www.dailymail.co.uk/health/article-2178306/A-singlepill-treat-Alzheimers-Parkinsons-AND-multiplesclerosis.html#ixzz2BGHZLg4f How Yoga Helps Multiple Sclerosis http://www.huffingtonpost.com/2012/11/03/yoga-multiplesclerosis_n_2040444.html Study: Infertility treatments can trigger MS symptoms in women http://www.examiner.com/article/new-study-when-multiplesclerosis-and-infertility-collide
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Research: Having MS and Something Else http://multiple-sclerosisresearch.blogspot.co.uk/2012/11/res earch-having-ms-and-somethingelse.html?utm_source=feedburner& utm_medium=email&utm_campaign =Feed:+blogspot/WvYVL+%28Multip le+Sclerosis+Research%29
FUNDRAISING FOR ASIAN MS
Where do the funds go? Asian MS is funded purely by donations, which are used for various purposes. They include grants for individuals to help them attend MSrelated events, contributions to research projects, and administration costs. The Myelin Repair Project One research initiative that has recently received a £1,000 donation from Asian MS is the Cambridge Centre for Myelin Repair, which is being supported by the MS Society. The first stage of the research programme saw the identification of a drug that could potentially repair myelin, which is damaged in people with MS. The project is now moving into a second stage where researchers will undertake pre-clinical research, with the aim of ultimately translating lab findings into a clinical trial.
Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.
Donations by credit card via the internet site justgiving.com:
www.justgiving.com/AsianMS
How to make donations by text message :
Send a text message to 70070 Remember to include the subject of the text: as AMSS89 and send it with the amount you wish to donate up to a maximum of £10 If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on. You may donate with any number from £1-5, and the money will go directly to the MS Society, which will transfer the cash generated to Asian MS.
You can also raise funds every time you shop through EasyFundraising:
http://www.easyfundraising.org.uk/causes/asianms
We thank you kindly in advance for your support
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Useful Information
General and Membership Enquiries: [email protected] Website: http://www.mssociety.org.uk/ms-support/support-groups/asian-ms Facebook: http://www.facebook.com/AsiansWithMS Twitter: http://twitter.com/AsianswithMS Saher Usmani, MS Society Support Groups Officer (please contact for hard copies of this newsletter and MS information booklets in different languages): 0208 438 0856 or [email protected]
Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and printed information in various languages and offer an interpreting service. Vinnie Kochhar – Chair Shiv - Treasurer Trishna – Newsletter Editor Mukesh - Fundraising Officer Rani - Publicity Officer/Support Officer
MS Society Website: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000 Asian MS JustGiving: www.justgiving.com/AsianMS MS Register: www.ukmsregister.org MS Trust (charity that provides information about MS): http://www.mstrust.org.uk/ MS Therapy Centres: http://www.msntc.org.uk/ Shift.ms (an online community for younger MS’ers): http://www.shift.ms/index.php MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.com
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Asian MS – Newsletter IMPOSSIBLE IS NOTHING!
The legal world always seemed so glamorous to me. Every week I’d sit and watch Ally McBeal and think “that could be me.” I even went to the business card machine in the local supermarket and had my own cards printed up at the age of 15. So when I left school, it was clear to me what I wanted to do. After finishing my A’ Levels, I went to study Law at university. And three years later I graduated, ready to take on the legal world! In my early 20’s, I was diagnosed with MS. I was devastated and dreaded the worst. The illness was new to my environment. I did not know anyone who had MS and there was a general lack of understanding as to what MS was. Due to my diagnosis, I could not go on to do my Post Graduate which was mandatory for me to become a solicitor. As I was initially very weak, I could not over exert myself and found comfort in keeping my mind occupied. In a way, I started feeling sorry for myself. I was fortunate to have exceptional support from my family and friends. In order to keep busy and divert my mind elsewhere, I began to take up various courses including complementary therapies. This was in the hope that I would be able to understand myself, my mind and my body; to try and understand why this was happening to me. The courses did not give me the answers to my questions but they did teach me many things, including having a positive mind and an ambitious outlook. I was moving on and getting on with my life. My legal dreams behind….. Is this what I wanted? A few years later, a conversation with my father changed everything. He reminded me how much I wanted to study law and how hard I’d worked during my degree. He was right – but I was only one third of the way to becoming a solicitor. I had a lot of catching up to do and over the years doubts had built up in my mind as to whether I could still do it. There was only one way to find out. I applied for the post graduate course and to my surprise, I was accepted. A few weeks later, I was back at university, studying the subject I loved. Going back to studying was difficult – not just adjusting back to lectures, coursework and exams, but also having the loss of income, social life and, most, importantly coping with the MS.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Looking back, it was not as hard as I thought. I had support from organisations that I did not even know offered help. This gave me even more encouragement. Throughout this time, all I could think was that I had to do this, not only for me but for my family. Today, I’m working as a solicitor in a busy law firm. I draft legal documents, negotiate deals and represent clients in court – just like the lawyers in If you would like others Ally McBeal! to hear about your My message is simple, “if you put your mind to it, nothing is impossible.” Having MS, or in fact, any other illness does not mean that your life has to stop. There may be obstacles and restrictions on your journey but the key is to stay positive. Ms Dee Popat - LLB (Hons)
Do YOU have a personal story to tell?
personal journey with MS then please do get in touch with us here at Asian MS. Email [email protected]
Dee has been a member of Asian MS for around two years. She has also been involved in other MS charity work and organised the “L-Factor” talent show which raised £5,000. She’s always looking to do more MS-related work when the opportunity arises. She is also involved in other voluntary work – she is/has been the Secretary of the Young Lohana Association of North London, Cultural Secretary for the Hindu Council in Brent, Chair of the Independent Custody Visiting Panel (Harrow), a volunteer with Ashiana (which helps children with learning difficulties), and a member of the Independent Advisory Group for Harrow Police. She also enjoys socialising, eating out and watching movies.
FUNDRAISING FOR ASIAN MS If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on [email protected] We rely on donations to keep going so if you know of someone wanting to raise money for charity, why not suggest that they fundraise for Asian MS? There are further details in this newsletter about how to make a donation and what the money is needed for.
Deadline for the next edition of the newsletter is 28th February 2013. Please send your stories, links, photos and news to [email protected]
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A message from the Editor……
Summer has come and gone very quickly and what a summer it was. The Olympic and Paralympic Games brought the nation together and put the spotlight on the amazing achievements of athletes from across the globe. I was lucky enough to see live action from both events but I was particularly amazed at the athletic ability of the wheelchair rugby players. What a completely crazy and brutal sport! What many Paralympic first-timers seemed to come away with was a sense of anything is possible and achievable if you put your mind to it. This is what we try to encourage here at Asian MS, and we would love to hear about your personal stories about how you have coped with your MS diagnosis. This is why the front page for this edition has been given to one of our members, Dee Popat, who continued to pursue her dreams of going into the legal field post-diagnosis. We are hoping to run a few fundraising events soon, so please do keep us informed of any ideas. With Eid, Navratri and Diwali having come and gone, and Christmas fast approaching, please do remember Asian MS when you’re thinking about making charitable donations during these celebratory events. Lastly, we rely on volunteers and there is always more work than there are hands to get it done! If you’d like to get involved please let us know. Specifically, we’re currently looking for a Membership Secretary and a Website Editor. Enjoy this edition and please pass it on to anyone who you think may be interested in our work. -Trishna x PS. Please don’t forget to book your flu jab, if you have MS! More details on p.13.
CONTENTS
-Impossible Is Nothing: A Personal Story….p.1-2 -A message from the Editor….p.3 -General News….p.4-5 -First Serve!: Tennis Tournament Fundraiser…..p.6 -A Chance To Get Involved….p.7-9 -Relapse Support Scheme….p.10 -Care & Support Update….p.11 -MS Society Awards….p.12 -Dates For Your Diary….p.13
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
-Paralympics Opening Ceremony; Launch of WAMS….p.14 -Funding Support Opportunity; Getting Your Flu Jab….p.15 -Recipe From Lubna; MS In The Media….p.16 -General Information….p.17 -Latest Research & MS In The News….p.18 -Fundraising For Asian MS….p.19 -Useful Information….p.20
GENERAL NEWS
International collaboration to speed up research into progressive MS
The MS Society has joined an international collaborative effort to speed up the development of treatments for people with progressive forms of MS.
Amy Winehouse Foundation funds short breaks for young people with MS
The Amy Winehouse Foundation has recently given
The International Progressive MS Collaborative was launched on World MS Day in May by charities from the UK, USA, Canada, Italy and the Netherlands, along with the MS International Federation.
the MS Society a £10,000 donation, of which £5,000 is to be spent on grants for short breaks, respite care and holidays for people with MS aged 25 and under. If you know anyone who may benefit from this opportunity please ask them to contact the Grants
Researchers and medical experts from across the globe will come together later this year to discuss priorities and identify the research that is needed to get us closer to finding treatments specifically for progressive MS. Dr Doug Brown, the MS Society’s Head of Biomedical Research and a member of the Collaborative said: “There are currently no treatments for people with progressive MS to slow the worsening of disability, and trials and studies to identify potential treatments have so far been disappointing. That’s why we’re delighted to be part of the International Progressive MS Collaborative – a proactive attempt by MS charities around the world to find an urgent answer to this problem.”
Team on 020 8348 0700 or [email protected]
For those with MS over 25, grants for short breaks, respite care and holidays are available through the MS Society’s Short Breaks and Activities Fund. More information about the fund
It is hoped that by working together, MS charities can identify research opportunities more quickly and effectively.
can be obtained from the contact details above or by phoning 0131 335 4050.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
GENERAL NEWS
MS Society Professional Study Grant Programme
The study grant programme is available to all health and social care staff who work with people affected by MS. The aim of the programme is to enable health and social care staff to attend courses or training events that will help them provide people affected by MS with the highest possible standard of care and support. The Society can award up to £1,000 per application and will usually contribute 50% of the total course fees; however this can be exceeded in exceptional circumstances.
Browse and shop online - visit
CHRISTMAS IS COMING…
This year’s MS Society Christmas catalogue is now available with a fantastic selection of cards, gifts and stocking fillers. All proceeds go towards beating MS.
Catalogue order line - call 0844 314 4384 Catalogue customer services - call 0844 314 4385
To apply for a grant, applicants must be members of the MS Society’s professional network, which they can join free on the website at: http://www.mssociety.org.uk/ms-support/forprofessionals/join-the-professional-network The grant application form can be found on the MS Society’s website at http://www.mssociety.org.uk/msresources/professional-grant-application-form For more information about the Study Grant Programme and other professional development opportunities please contact the education department on 020 8438 0888 or email [email protected]
www.mssocietyshop.co.uk
ONLINE CHATTER
Currently being discussed on the Asians MS Facebook group: -Getting your own MRI scan -Vitamin D -The Paralympic Games -Asian attitudes towards disability -Disease Modifying Drugs and other medication -Do you prefer cooler weather? https://www.facebook.com/group s/2416402103/?ref=ts
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
FIRST SERVE!
In keeping with the MS Society’s theme of “Keeping Active”, Asian MS Committee members Vicky Rose and Vinnie Kochhar, decided to raise money for the MS Society and Asian MS by holding a Tennis Tournament and Lunch at the Chandos Lawn Tennis Club, their local tennis club in Hampstead. Having enlisted the professional help of another club member, Pam Henry, a Tennis Doubles Day was organised for a fine, crisp September morning. Around 30 members and non-members gathered at the Club House, bright and early. Most contenders donned the bright orange t-shirts of the MS Society and warmed up with a little pink bubbly; the competitors took to the courts with great enthusiasm. The matches were hotly contested; the pride of Chandos Tennis Club was at stake and there was the promise of extravagant prizes….. Two hours later, two winners emerged, our own Greg Rack and a guest from Regents Park Tennis Club, Nancy. Food also featured high on the agenda, in the morning guests were offered mini Danish pastries, home-made almond shortbread and exotic fruit platters. Twenty other supporters and friends joined in for lunch, which was a lavish affair and included fatoush salad, avocado with wasabi mayo and aloo chaat as starters; teriyaki salmon, Maharashtran chicken and aubergine miso to follow; and finally, New York cheesecake, chocolate tart and mango fool. Game, set and match to our Head Chef Madhvi Chanrai who generously donated her time and energy! It was all washed down with fine wine from an anonymous donor!! Then it was time to get down to the serious business of raising more funds via the silent auction and the raffle. Many local businesses had donated prizes. The Muscles from the Chandos coaching team, had each donated a tennis lesson; these prizes proved to be very popular and helped us to raise £400 from the raffle alone. A special thanks to all the donors of the silent auction prizes, Gerry Defries, local artist for his painting; “Racing in Barbados”; Mona Chander for the Jimmy Choo Clutch; Kara Dressel for Pilates Classes; and our own Rajiv Taneja for tickets to a Man Utd match at Old Trafford. These donations raised over £1000. Thames Valley Sports deserve a special mention for their support and generosity in providing the tennis balls for the tournament and having a stall at the event, which was manned by Asian MS member and Thames Valley Sports owner, Ramesh Gangotra. The MS Society staff, Lee Dainty and Saher Usmani were a great reminder of why we were there - to get loud about MS. Behind the scenes Laurence Tickell helped to make the whole event colour coordinated and MS themed. Chandos Lawn Tennis Club provided their lovely facilities to enable us to raise over £3000 all because of the big heartedness of the members and guests. Team Chandos were truly amazing, they know who they are. A brief appearance by club Chairman, David Bernstein, also Chairman of the FA ensured that the football fans at the club were also kept happy; a great way to kick off the autumn and end the Summer of Sport.
~Vinnie Kochhar, Asian MS Chair
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
Experiences and perceptions of healthcare services from people with MS and their clinicians This study aims to gather the experiences of people with MS of health care services and investigate what they feel has been helpful or could be improved What will participants be asked to do? In this study you will be asked to talk to a researcher about your experiences of health care services for MS and your health care needs (for both physical and psychological/emotional symptoms). This will last up to an hour. This can take place in your home or work, or at a University of Manchester building. We would like to make taking part as convenient as possible for you, however, please know that we cannot reimburse your travel expenses. A small group of people will be invited to take part in a follow-up interview six months and twelve months after the original interview. You can take part in the original interview without taking part in the additional interviews. If you are over 18 years old with a diagnosis of MS and are living in the Greater Manchester region, the study would be interested in hearing from you. It runs from September 2012 to September 2013. If you would like to find out more about this study and would like to receive a participation information sheet, please contact Abigail Methley at [email protected] or on 07950-619368
THE MS REGISTER – Have you signed up yet?
The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. You can take part by completing a series of simple online questionnaires. If you are over the age of 18 and living in the UK, with a confirmed diagnosis of MS made by a consultant neurologist, you are eligible to take part in this study. There are also a small number of pilot sites that are collecting clinical information: Royal Victoria Hospital, Belfast; Western General Hospital, Edinburgh; St. Mary’s Hospital, London; Queen’s Medical Centre, Nottingham; and Morriston Hospital, Swansea. http://www.ukmsregister.org
KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: http://www.mssociety.or g.uk/ms-research/getinvolved-in-research
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
‘My MS, My Needs’: Understanding the needs of people with MS in the UK In early-November, the MS Society will launch one of its largest ever surveys, to help it to understand how well the UK is meeting the health and social care needs of people with MS. A short questionnaire will be posted to all the Society’s members who are over 18 and have MS, to ask if they are able to access the care and support they need. The results will allow the Society to campaign for the needs of people with MS.
Help the MS Society set future MS research priorities The MS Society is leading a new project to put people affected by MS at the centre of setting research priorities. Through this project the Society hopes to find the top 10 unanswered questions in MS research.
People affected by MS, MS professionals and neurologists will identify the questions and set the research priorities. This could include any area of MS, from treatments for a particular
change and work to develop services that better meet symptom to support for day-to-day life with MS.
The results will be announced during MS Week 2013, This new priority setting partnership is supported by the James Lind Alliance, an and, as well as a national picture, we will analyse results locally to understand the ‘postcode lottery’ in services for people with MS. To analyse results locally, a large response is essential. Everyone’s response matters and will be independent, non-profit organisation. They specialise in bringing patients, carers and health care professionals together to identify and prioritise unanswered questions. They will guide this work to ensure an unbiased result.
used to support the Society’s work for years to come. The survey, which takes 10 -15 minutes to Participating is easy - the questionnaire takes 15-20 complete, is an opportunity to ask questions minutes to complete. For more information contact the research team at [email protected] or on 020 8438 0822. important to you which could help steer future MS research. Take part in the survey at www.mssociety.org.uk/JLA
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
A CHANCE TO GET INVOLVED
Living with unpredictability in MS This study aims to explore the question ‘what is it like to live with an unpredictable illness?’ What will participants be asked to do? Participants who live in the Hull, Lincoln and Nottingham area will be offered the choice between having a face-to-face interview, a telephone interview or attending a focus group. Participants who live outside of these areas will be asked to take part in a telephone interview. The interviews/groups will be conducted using a semi-structured format and will be recorded for later analysis. Interviews will last about one hour; focus groups will be held at a local venue and will last about one and a half hours. Please note that it may not always be possible to run local focus groups due to numbers. Each person will receive an introductory phone call to explain the study and answer any queries or questions. Participants will then choose their preferred way of taking part (if possible); once consent has been given the participant can take part in one interview/group. If you have a diagnosis of MS and can speak English, you will be eligible to participate. The study runs from October 2012 to February 2013. If you would like to find out more about this study and would like to receive a participation information sheet, please contact Hannah Wilkinson at [email protected]
MS Activity Weekend
Friday 24th - Monday 27th May 2013 For people with MS, their families and friends Choose from a variety of activities or relax in the tranquil setting of the beautiful Kielder Water & Forest Park. 3 Nights £317 Includes accommodation, activities and all meals Or book the Respite Care Package (over 18) 3 Nights £488 Includes care, accommodation, activities and all meals
To book call 01434 250232 or email [email protected]
www.calvert-trust.org.uk
Tips For Staying Healthy Over Winter ~Keep your Vitamin D levels topped up with supplements ~Make sure your heating is working ~Eat lots of fruit and vegetables ~Keep up with your exercise routine ~Wash your hands to keep those bugs away ~Ensure you have sufficient medication at home
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Mentioned in the last newsletter, the MS Society is running a scheme which Asian MS is supporting. This is a great opportunity for our members to become involved in this innovative pilot scheme.
RELAPSE SUPPORT SCHEME
A trained volunteer from Asian MS will help individuals to decide how best to meet their nonmedical needs during a relapse, the plan will then be written up and the volunteer will be the participant’s point of contact for help. A small grant of £100 will be made available for the person with MS to spend on providing support during a relapse. They can use the money for almost anything they need, for example, contributing towards the cost of petrol if a colleague gives them a lift to work. If you are interested or know anyone who has MS (this is open to all types of MS) and would like to get involved, please do email Saher at the MS Society at [email protected] or call her on 020 8438 0856.
The Relapse Support Scheme was piloted in 2010 in East Sussex and the participants all agreed that this planning process was “worthwhile and made them feel more in control of their lives and the situation”. The scheme is now being piloted with Asian MS to see whether it will be successful with a wider group of people. It is a scheme that assists individuals to plan ahead and avoid disruption to their day-to-day activities when they have a relapse. Symptoms when having a relapse can’t be predicted. However, individuals can plan what support they may need should they have a relapse. The scheme will show individuals how to plan and where support is available.
Example of a Relapse Support Plan . Name: Felicity Farmer (This is a lady that has small children, and works part-time. She has friends and family close by to support her) What help do you think you will need? How often do you think you’ll need this support per day / week? Twice a day Who is your 1 choice who can provide this support for you?
st
Who is the alternative person who can provide this support if your st 1 choice isn’t available?
How much money to say ‘thank you’ / pay for support?
Someone to drive the children to school and home again
My friend My friend Tracey £10 towards petrol Donna, as her children go to the same school Shopping for food Twice a week My friend Pam My friend Tracey £5 bunch of flowers to say thank as she can do you my shopping at the same time as hers Travelling to and from work if Twice per My colleague My dad £10 towards petrol I cannot drive day Philip lives near by and I can share a lift with him To save you looking for contact numbers when you need them, why not list them here so they can all be easily found. Mum & Dad: 01273 555555 Donna: 01273 666666 Tracey: 01273 777777 Pam: 01273 888888 Peter: 01273 333333 Philip: 01273 444444 Jo: 01273 222222 Page 10
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
CARE AND SUPPORT UPDATE
Supported short breaks – A new partnership with Carers Trust and local Crossroads Care schemes hotels in Blackpool or Lytham St Annes over any weekend in December.
People affected by MS who live in England and Wales Weekend stays are 3 nights from Friday night to can now access care and support during their short Monday morning. The price for two people is £179 breaks and holidays, thanks to a new partnership for dinner, bed and breakfast. between the MS Society and Carers Trust. Both hotels are accessible with ensuite wet floor Care will be provided by trained care support workers shower rooms, hoists and other specialist from local Crossroads Care schemes, which are equipment. Bond have a CQC-registered care network members of Carers Trust. They will come to agency which can be booked for the stay if wherever you are staying, to provide that support for personal care and support is needed during the you. Having someone else take over the caring break. responsibilities for a while means that families can go Contact Bond Holidays to discuss a booking on away together – or people with MS can travel 01253 341218 or email [email protected] independently – safe in the knowledge that the main Make sure you mention this offer when booking. family carer will get a chance to rest and recharge their batteries. If you have any comments about Bond Holidays or their accessible hotels, please call 020 8438 This is a pilot project, so at the moment supported 0805 or email [email protected] short breaks can be taken at destinations in most of Wales, on the south coast of England and in East Find Me Good Care – a new website helping Anglia. people make better choices about care and To find out more about the service and how it works, support or to order an information leaflet, call 020 8438 0805 Find Me Good Care, has been developed by the or email [email protected]. Social Care Institute of Excellence to help people take their first steps in seeking the right care. It includes information and guidance on how to Bond Holidays – 2 for 1 MS taster weekends in choose and pay for care, together with a directory December of providers and the opportunity to provide feedback. As a first step in a new partnership with Bond Holidays, we are pleased to announce that people The MS Society is a partner of Find Me Good with MS, their families and carers will be able to take Care, and will hopefully make it easier for people affected by MS to make the choices that are right advantage of a 2 for 1 offer at their accessible for them. More information: www.findmegoodcare.co.uk.
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
The Closest I Shall Ever Get To A Paralympic Medal
-THE MS SOCIETY AWARDS, A Personal View by Vinnie
My big chance to mingle with the stars came at the MS Society’s Annual Awards Ceremony, held at the prestigious Royal Garden Hotel, Kensington on 25th September. I was not sure how all the excitement of last year could be beaten, Amrit Gajjar won the award for Carer of the Year (having been nominated by Asian MS.) Another nominee was Richard Gau, in his 80s and sole carer for his wife who is severely disabled by MS and is also diabetic. It was a privilege to sit beside such smiling selfless people. So, when Kate Silverton announced this category I thought how could you possibly choose between any of these heroes (not to mention the third finalist Jan McDonald who was not on our table!)? An impossible task, but in the end the winner was Rory. I remain touched by their stories and struck by their good cheer and humility.
I thought the 2012 event would be a quieter affair and would be a chance to observe and network for Asian MS, as the spotlight would be elsewhere…… This time, I was invited as I had been a Judge for the MS Employer of the Year category. I had thoroughly It was an inspiring afternoon and the icing on the enjoyed the judging process, as it had been a cake was my photo with a silver Paralympic chance to learn about some of the gold star medal and its true owner (!) Stephanie Millward. organisations that create an excellent working She was the environment for staff and awareness of the winner of the MS fluctuating condition of MS. Our shortlist included Inspiration of the AXA Insurance, East Durham Homes and Lloyds Year 2012. Being Banking Group but there were many other organisations who were also worthy of being diagnosed with nominated. MS at the age of The welcome drinks reception was the ideal time to raise the profile of Asian MS with new faces. So I found myself standing next to Janice Winehouse (mother of the legendary Amy) and rubbing shoulders with Oritse Williams of JLS pop group fame. Top MS researchers present included Prof. Alastair Compston and Prof. Robin Franklin. Volunteers were also honoured for fundraising or raising awareness and they enjoyed an afternoon they would never forget. I felt extremely blessed to be seated next to one of the youngest nominees, Rory Bailey. His mum had put him forward for the Carer of the Year Award. He has cared for his mum from the age of 14yrs but has also managed to pass GCSEs and gain a place on a bricklaying course. How could he possibly do it all?
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17 was no bar to her winning 5 medals at the Paralympics in swimming! I needed to get my hands on that piece of silver and here is the proof. I felt honoured to be with all these amazing individuals and left the event on a high. I ran to the cloakroom for my coat only to be stood behind Prof. Giovannoni of Team G fame. I saw his name tag and said “I know you! You’re Trishna’s hero Gavin!!” He laughed; yes he knew Trishna well (our Newsletter Editor no less) and praised her for all her hard work. At least I did not have to explain about Asian MS to him….!
~Vinnie Kochhar (Asian MS Chair)
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
DATES FOR YOUR DIARY
MS Research Day The 4th MS Research Day by Professor ********************************** Gavin Giovannoni and the Neuroimmunology Group at The Royal London Hospital will …..NEWS FLASH….. nd take place on Saturday 2 February from 10am to 3pm. MS Society Chief Executive Simon Gillespie is This year, the talks will cover topics ranging leaving the MS Society to become Chief Executive of from symptom management and lumbar the British Heart Foundation (BHF). Asian MS would punctures to updating you on the group’s like to wish him well in his new role. siblings study. There will also be speakers from Queens Square as the group joins ********************************** UCLPartners. If you want to talk directly to a researcher, or you just need a break and refreshments, ASIAN MS NEEDS there’s a room for you to relax, have a hot drink and talk to the team informally. YOUR HELP! You can stay in one place and hear everything, or you can move between rooms As we expand, Asian MS is in desperate if you wish. It will take place at Church need of more volunteers to help us to House Conference Centre, Dean’s Yard , continue offering our support and services. Westminster, SW1P 3NZ. To book your Communication with our membership is of ticket please go to: utmost importance to us and we are http://msday.eventbrite.co.uk/ currently looking to appoint a Membership Secretary and a Website Editor. The Membership Secretary would be mainly MS Society’s 60th Anniversary! responsible for dealing with correspondence and membership issues (such as maintaining the membership In 2013, the MS Society turns 60 database). The Website Editor would be in years old. It was founded by Mary charge of updating the Asian MS website, and Richard Cave to support and particularly uploading e-editions of the empower people affected by MS. Newsletter and Asian MS news. Please contact [email protected] if The MS Society will be celebrating the you are interested in either post and would achievements of everyone involved in the like further information. Emails should be organisation and looking forward to an addressed to Vinnie Kochhar. exciting future.
Rather than take resources from vital research and support, celebrations will be integrated into existing events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra “60th sparkle”. If you have any ideas about how to make fundraising events that extra bit special then please email them to: [email protected]
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
SANJAY AND VINNIE AT THE PARALYMPIC OPENING CEREMONY
Firstly, it was an absolute privilege to have received tickets via the first ballot. Following the wonderful Olympic games, I was eagerly anticipating the opening ceremony of the Paralympics following the warm up.
Launch of WAMS
“Women Against MS,” or WAMS, is a group of MS Society volunteers who believe that WAMS will become a tailored support group that fits the needs of all women affected I went with Vinnie - well she doesn’t get out by much. It started with an unconventional trip to Multiple Westfield to buy (for guess who) some overpriced Sclerosis shoes. I suppose that was my good deed for the in the day; I never realised I had such serenity! numerous guises that women are expected to be We moved on to the fabulous stadium to absorb the atmosphere. It mother, wife, lover ... an endless list. was kind of surreal The group is having its launch on 26th being there and we January 2013 at the Charles Clore Centre had to keep at Hampton Court Palace, East Molesey, pinching ourselves Surrey, KT8 9AU. It will run from that we were. Even 12.30pm-3.30pm and the programme will before the include: ceremony started, Welcome: Hilary Sears – Chairman the music was great and as Police fans, it was of the MS Society delightful to hear ‘’So Lonely’’ played in such a Jo Johnson: Author of “Shrinking wonderful arena, however, Vinnie thought it was The Monster” hilarious to sing the words “Sue Lawley.’’ A glass of sparkling wine and Different folks different strokes! afternoon tea Once the ceremony began, it was awe inspiring. Booking is currently closed due to It was full of colour, fun and intelligence. It is very the event’s popularity. However, if difficult to capture in words, it was truly you would like to be added to the magnificent. The Queen and the National Anthem waiting list, then please go to: were very uplifting and yes Vinnie did stand http://wamslaunch.eventbrite.co.uk/ leaning on my chair!! It was certainly an ?access=WAMS-VIP experience and magical moment that neither of or contact WAMS London us will ever forget.
~Sanjay Chadha (Asian MS Co-Founder & Committee Member)
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[email protected] Tel: 07848 105191
Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Funding opportunity for people with MS
National charity the MS Research and Relief Fund offers grant funding for items including equipment, aids, adaptations, holidays and respite care. The fund can be used either to complement grants awarded by the MS Society where a shortfall in funding exists, or as a single funding opportunity. The registered charity will consider applications for grants for individuals and for groups. For more information contact the charity’s Grants Manager, Dave Farham on 01670 505829 or [email protected] or visit www.msresearchandrelief.org; or contact Julie Gilson, MS Society Grants Manager at 020 8438 0950 or [email protected]
Protecting yourself against the flu
It’s that time of year again when everyone seems to be coughing and sneezing. The flu season is upon us and it is important for MS’ers to know whether or not they should be getting their jab. The current general advice is that people with MS are eligible for a free flu jab on the NHS. These are usually administered in your GP’s surgery. You should be able to speak to your MS Nurse, Neurologist and/or GP about this. The flu jab is an inactive vaccine so is generally safe for MS’ers, however, if you are on any kind of disease modifying drug or symptomatic relief drug then you need to speak to a medical professional first, to ensure that there will be no interactions. Please go to the following links for more information:
FEEDBACK NEEDED!
Asian MS would like to receive your feedback about our newsletter. Please go to the following link to complete the survey: http://www.surveymonkey.com/s/88H DQL6
https://www.wp.dh.gov.uk/immunisation/files/2 012/08/2900359-Seasonal-Flu-A5_v1_0A.pdf and http://ms.about.com/od/treatments/a/flu_shot.h tm
Don’t wait for a flu outbreak to get your shot!
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Recipe from Lubna
Chicken Curry Ingredients: 2lb/900g Chicken (on and off the bone) 2 large onions chopped 1 tsp fresh ginger paste 1 tsp fresh garlic paste 1 tsp cumin (jeera) powder 1 tsp coriander (dhaniya) powder 1 tsp red chilli powder or to taste Salt to taste 1 tsp garam masala 2 chopped tomatoes 2 tblsp vegetable ghee or oil Fresh coriander to taste Method: -Cut the chicken into medium sized pieces. Heat the ghee or oil in a large saucepan. Add the onion and fry until golden. -Add the garlic and ginger paste and fry for a few moments. Add all the ground spices and fry for a minute, making sure the mixture does not stick to the bottom of the pan; add a splash of water if required. Then add the chicken, mixing it well with the spices. -When the chicken has browned, add a cup of water and salt to taste. Cover pan with lid and simmer over a low heat for 15 minutes. -After 15 minutes, add the chopped tomatoes and continue to cook until the chicken is tender. -When the chicken is cooked add chopped fresh coriander. Serve with either rice, chappatis or naan bread.
Lubna, an Asian MS member since 2005, has been kindly sharing her delicious recipes with Asian MS. She was diagnosed with MS following an MRI scan in 1991, with symptoms having included optic neuritis and fatigue. While she feels that she’s slowed down a great deal as she’s grown older, she is still ablebodied and considers herself to be very lucky. She joined Asian MS after she met Shiv (Asian MS Treasurer) at MS National Centre. He was the first Asian person that she’d met who also had MS. She has previously served on the Asian MS committee.
MS In the Media
Shift.ms has been involved in the making of some ground-breaking short films about MS. They are available to view on the Shift.ms site and on the Shift.ms channel on You Tube. “GALLOP”: http://shift.ms/gallop/ “BELONG”: http://shift.ms/belong/
BLOGGING Rani, the Asian MS Publicity & Support Officer has her very own blog. Check her out at: http://missranikaur.wordpress.com/
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
General Information
Information The MS Society has a range of publications containing information and advice for carers and families: • Caring for someone with MS: a handbook for family and friends • MS in your life – a guide for young carers • MS Carers: The man’s guide to caring for someone with Multiple Sclerosis
New editions/modifications for MS Society publications Diet and Nutrition (MS Essentials 11, Fourth Edition August 2012) Oral Health factsheet (September 2012, download only)
For a list of all the MS Society’s key You can order these from the Information team publications showing the latest editions by calling 020 8438 0799 or from the online shop and revisions visit the website: www.mssociety.org.uk/mson the MS Society website. resources/key-publications or call 0300 1000 801. Financial assistance There are two grant funds specifically for carers To contact the MS Society Information • Young Carers Fund Team: Email [email protected] • Carers Opportunities Fund. or call 020 8438 0799 (weekdays 9amThere is also support for carers through the 4pm) Short Breaks and Activities Fund. Carers can apply to this for funding towards short breaks *********************************** and holidays. Find out more from the Grants Team on 020 If you would like a copy of the MS 8438 0700 or [email protected] or visit Society’s latest MS booklet, which has the grants pages on the website. been translated into 12 languages If you live in Scotland, please call 0131 335 4050 including Bengali, Farsi, Gujarati, or email [email protected] Hindi, Punjabi & Urdu, please contact Saher Usmani on 0208 438 0856 or Emotional support [email protected] The MS Helpline is available to give free and They are also available on USB stick for a small fee. confidential advice and support to anyone affected by MS from 9am-9pm, Monday- Friday. *********************************** The helpline number is freephone 0808 800 Please let Asian MS know if you 8000. Please specify if you would like to speak would like to submit a nomination with someone from Asian MS and you will be for the MS Society Awards 2013, as directed to one of our support officers. we will be able to offer help and
support when filling out the nomination forms!
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
LATEST RESEARCH & MS IN THE NEWS
Exclusive: MS drug 'rebranded' – at up to 20 times the price http://www.independent.co.uk/life-style/health-andfamilies/health-news/exclusive-ms-drug-rebranded--at-upto-20-times-the-price-8209885.html Scots scientist in MS breakthrough http://www.heraldscotland.com/news/home-news/scotsscientist-in-ms-breakthrough.19103935 Irish drug maker Elan spins off research arm Brain Research Could be ‘LifeChanger’ for Multiple Sclerosis Patients http://americannewsreport.com/brai n-research-could-be-life-changerfor-multiple-sclerosis-patients8816585 Scientists develop nanoparticle method to help tackle major diseases
www.telegraph.co.uk/finance/newsbysector/pharmaceutica http://www.independent.co.uk/news/ science/scientists-developlsandchemicals/9472275/Irish-drug-maker-Elan-spins-offnanoparticle-method-to-help-tackleresearch-arm.html major-diseases-8327197.html NHS is failing patients with neurological conditions, claims Genzyme touts positive results for report MS drug Lemtrada http://www.guardian.co.uk/society/2012/aug/01/nhshttp://www.bostonherald.com/busine neglect-neurological?INTCMP=SRCH ss/technology/general/view/2022110 A single pill could treat Alzheimer's, Parkinson's AND 1genzyme_touts_positive_results_fo Multiple Sclerosis r_ms_drug_lemtrada/ http://www.dailymail.co.uk/health/article-2178306/A-singlepill-treat-Alzheimers-Parkinsons-AND-multiplesclerosis.html#ixzz2BGHZLg4f How Yoga Helps Multiple Sclerosis http://www.huffingtonpost.com/2012/11/03/yoga-multiplesclerosis_n_2040444.html Study: Infertility treatments can trigger MS symptoms in women http://www.examiner.com/article/new-study-when-multiplesclerosis-and-infertility-collide
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Research: Having MS and Something Else http://multiple-sclerosisresearch.blogspot.co.uk/2012/11/res earch-having-ms-and-somethingelse.html?utm_source=feedburner& utm_medium=email&utm_campaign =Feed:+blogspot/WvYVL+%28Multip le+Sclerosis+Research%29
FUNDRAISING FOR ASIAN MS
Where do the funds go? Asian MS is funded purely by donations, which are used for various purposes. They include grants for individuals to help them attend MSrelated events, contributions to research projects, and administration costs. The Myelin Repair Project One research initiative that has recently received a £1,000 donation from Asian MS is the Cambridge Centre for Myelin Repair, which is being supported by the MS Society. The first stage of the research programme saw the identification of a drug that could potentially repair myelin, which is damaged in people with MS. The project is now moving into a second stage where researchers will undertake pre-clinical research, with the aim of ultimately translating lab findings into a clinical trial.
Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.
Donations by credit card via the internet site justgiving.com:
www.justgiving.com/AsianMS
How to make donations by text message :
Send a text message to 70070 Remember to include the subject of the text: as AMSS89 and send it with the amount you wish to donate up to a maximum of £10 If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on. You may donate with any number from £1-5, and the money will go directly to the MS Society, which will transfer the cash generated to Asian MS.
You can also raise funds every time you shop through EasyFundraising:
http://www.easyfundraising.org.uk/causes/asianms
We thank you kindly in advance for your support
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
Useful Information
General and Membership Enquiries: [email protected] Website: http://www.mssociety.org.uk/ms-support/support-groups/asian-ms Facebook: http://www.facebook.com/AsiansWithMS Twitter: http://twitter.com/AsianswithMS Saher Usmani, MS Society Support Groups Officer (please contact for hard copies of this newsletter and MS information booklets in different languages): 0208 438 0856 or [email protected]
Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and printed information in various languages and offer an interpreting service. Vinnie Kochhar – Chair Shiv - Treasurer Trishna – Newsletter Editor Mukesh - Fundraising Officer Rani - Publicity Officer/Support Officer
MS Society Website: http://www.mssociety.org.uk MS Society Helpline: 0808 800 8000 Asian MS JustGiving: www.justgiving.com/AsianMS MS Register: www.ukmsregister.org MS Trust (charity that provides information about MS): http://www.mstrust.org.uk/ MS Therapy Centres: http://www.msntc.org.uk/ Shift.ms (an online community for younger MS’ers): http://www.shift.ms/index.php MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.com
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Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
